CFS Patient Advocate

Patient Advocate

The job of Patient Advocate came upon me uninvited. I did not apply for this job, nor did I have any qualifications for it. I am a sculptor, not a doctor or a researcher. My daughter became sick with a mysterious fatigue illness and I was the obvious person to fill the job. Learning the job of a PA unfolds over time and there is no instruction manual. Certain ideas and thoughts can be transferred from former jobs and former lives, but much has to be learned from scratch. It is helpful in doing the PA job if you have a lot of time and a lot of money, as the solution to this disease takes a great deal of both. It would also be helpful to have an education in bio-chemistry, of which I have none. The most important qualification that a Patient Advocate needs is persistence and discipline. A PA also needs to remain objective and detached, even under the most extreme conditions. Every Patient Advocate has a patient. My patient is my daughter. The objective of this particular Patient Advocate is to make his daughter better. How to set about it is another matter, and turns out to be a complex and sustained set of illusive problems. While most doctors look at a broad and confusing set of symptoms and try to attach treatments to an entire cohort of partially differentiated patients, the PA’s problem is slightly different. The Patient Advocate, by job definition, is obliged to help one person - in this case, his daughter - his patient. Thus the PA is looking at one narrow and confusing set of symptoms, which makes his problem slightly easier.

Christopher Cairns

About Me

I am the patient advocate of my 40-year-old daughter. She is housebound in St. Paul MN with CFS/ME. This blog presents reports from several lectures or conferences. It also attempts to define, in my own way, the role of a Patient Advocate. The premise is simple. I make my observations in hopes that they might be beneficial to others, in the same spirit of generosity that so many others' comments have been useful to me. These entries are presented for information only purposes. In no way should they be taken as medical advice. I am not a doctor and I do not want to be one.

Followers

Friday, August 11, 2017

This post is preceded by 2 posts on sleep. These three posts are
designed to be viewed together.

I started to get interested in medicinal marijuana about
five years ago. There were a few examples of ME/CFS patients who used various marijuana
medicinals for pain, inflammation and sleep.Most resided in states where medical marijuana was legal or about to
become legal.

Cannabis has over 70 cannabinoids of which the most well
known is THC, the psychoactive part of the plant.A second component or cannabinoid has
recently received a good deal of attention. It is CBD or cannabidiol. CBD
is believed to have various medicinal activities.

The Federal government
continues to list marijuana as a schedule 1 drug. One very great consequence of
this is that research into marijuana is severely and intentionally restricted.
With more states legalizing marijuana, the bigger states are starting to do
some research into this plant. Research continues in Israel, Spain, UK and
Italy, but it is, predictably, underfunded.

Anyone who wants to engage this subject is going to have
to proceed on their own, guided by trial and error.

In reality there are two allied plants, cannabis and hemp.
Cannabis is loaded with THC, while hemp has very little. Both have a great many
other cannabinoids including CBD, CBN, CBG, and CBDa.

CBD from marijuana has always been touted as the gold
standard of CBD. Some propose that in order to be effective CBD needs to have a
certain amount of THC with it. Marijuana CBD is restricted
to states where marijuana is legal. It appears that Mary's Medicinals makes good products.

About five years ago, there were only a few companies that
produced CBD from hemp. These CBDs were legal, but their quality was challenged
by many, including the marijuana CBD makers. Also the FDA objected to the claims of some of these hemp CBD producers.

It remains to be determined if hemp CBD is as good as
marijuana. However, certainly things have radically changed in the last few years; there has been an astonishing amount of sophisticated hemp CBD that is available through the Internet. Hemp
CBD is legal in all 50 states.

There is a growing body of positive anecdotal information of hemp CBD
use, but there is very little of what one might call real science. This
might change but I wouldn’t hold my breath. The main claim for both forms of
CBD is that they reduce pain and diminish anxiety. Hemp CBD has been called
“calming drops” by my own daughter.

The question remains. Will CBD be useful to ME/CFS patients?
We are about to find out, as more patients are giving this a try. As with
almost everything with this illness, the process is wholly trial and error. Additionally, every treatment must be individualized.

The present choice in high grade, organic hemp CBD is quite
surprising. At one end one finds Mary’s Nutritionals pure CBD. This has been
heated and refined to take all terpenes and additional cannabinoids out of the solution, leaving only pure refined CBD oil. This oil is at the expensive end of
the spectrum. One can find similar CBDs at RSHO with their RSHO-X - no trace of
THC, pure organic hemp CBD. At the other end of the spectrum is raw unadulterated, unheated hemp
CBD, also organic, some grown in the US.A good example of this can be found at Nu-Leaf. These products have CBDa and CBD along with terpenes and all the cannabinoids in
the hemp plant, producing what is referred to as the "entourage effect". The entourage effect is the supposed but unknown interaction of all the cannabinoids and terpenes working together. In
between, and cheaper, is a heated, partially refined CBD that can be settled on in various places. Read about this at Endoca.

As there are arguments as to whether THC is necessary to make
things go, so there are arguments between the use of pure refined hemp CBD oil versus the
raw plant oil with all the terpenes and host of cannabinoids that work together to create the “entourage effect”. The positive way to
look at this is that there are many options to try.

In addition to oil, there are pastes, extracts, pills, crystals, gels and
suppositories. This industry has exploded. Put a Google alert on hemp CBD and
start reading.

The study of the Endocannabinoid system can be said to have
begun by the Israeli scientist Raphael Mechoulam with the discovery of the
psychotropic cannabinoid THC in the mid-1960’s. (Dr. Mechoulam remains the
foremost marijuana researcher in the world.) Further research identified the
brain receptor CB1 in the early 1990s, quickly followed by the discovery of a
second receptor CB2 located throughout the human body. With these discoveries
the Endocannabinoid System was identified, leading to discoveries that this
very system helps regulate a host of processes in the body - and the awareness
that deficiencies might have some connection to chronic illness.

With so many dysregulations and disconnects in this strange
illness of ME/CFS, it is worth considering that these patients suffer also from
Endocannabinoid Deficiency System. The supposition is that these deficiencies,
these Endocannabinoid deficiencies, can be corrected – with CBD or other cannabinoid items. Certainly
the symptoms of Endocannabinoid Deficiency seem to shadow ME/CFS symptoms.

There is additional study and use of other cannabinoids from
hemp and cannabis for seizures, sleep, pain, anxiety, migraines, wound healing,
and the rest. You name it and some cannabinoid is reputed to help treat it.
THCa is in the raw cannabis plant. If one heats THCa it converts to THC. The
straight marijuana plant can be treated in a cold fashion (unheated) - and
the THCa preserved. THCa is a non-psychoactive compound, which is reputed to
have many of the qualities of CBD. CBN is another interesting cannabinoid. CBN
can be increased in the marijuana plant material by aging the main product, exposing it
to sun and light for a long time – months. Converted into a medicinal, either a
tincture or a salve, CBN is reputed to have high sedative effects. Others say
that the sedative effect of this aged product comes from the aged terpenes. CBG
is another cannabinoid that is gaining interest, also for the same properties –
its calming and sedative properties.

My main interest at the moment is in these various
cannabinoids as sleep enhancing agents. Not to beat a dead horse, but a good
sleep sensor is very helpful in seeing changes wrought by different compounds
in different arrangements. A pulse and oxygen saturation monitor also could be
helpful, in conjunction with low-dose oxygen. A sleep sensor can separate out
and determine sleep initiation, sleep duration, length of sleep entirety or
sections of sleep. This can be immediately obvious and adjustments made based
on the sensor readings.

So the world is working its way back to cannabinoids, which
does not make everyone happy. There is a great battle going on, and it is not
difficult to identify its outline and terrain. Where this will go we do not
know. The surprising thing is that cannabinoids have been used as medicinals
for thousands of years before being put out of business in the US in 1934 and
then really put in the slammer by Richard Nixon in the mid-1970s.

Both ME/CFS physicians Paul Cheney and John Chia have used CBD with their patients. Here is an additional blog that has information on CBD.What is written about is educational in nature. It is not medical advice. Please consult your physician (if you have one) for medical advice.

Friday, August 4, 2017

The sensor helps gather some important objective information - when the patient goes to sleep, when she is awake, her heart rate and movement, when the patient awakes. One can quibble that the measurement of various types of sleep are only estimations, but I maintain that over time one gets an idea about what one might be able to do to improve sleep. Certainly, over time, one can decipher a better night's sleep from a worse night's sleep. One can detect patterns of improvement or regression. One can ask why and try various supplements or drugs.

Let me make some suggestions as to what might
help. None of this should be taken as medical advice. I am not a doctor and
have never had the slightest interest in being one (although I have taught a
number of terrific doctors!).

Vasoactive Intestinal peptide

Vasoactive Intestinal Peptide
(VIP) is a neuropeptide with a host of activities in the human body. In ME/CFS,
it was studied by Don Staines about ten years ago. Very little follow up study in ME/CFS has been done of this neuropeptide. One wonders why. Both Dr. Paul Cheney and Dr.
Ritchie Shoemaker used it in their practices with varying success (until they
retired). Dr. Shoemaker describes it here, as it applies to CIRS. It appears to have broad activity. Dr. Cheney believes it helps reboot the deranged sleep cycle in the illness. The idea is
that it needs to be taken from 9-18 months to have effect. VIP is
taken in very small amounts by mouth several times a day. VIP can be procured by prescription from one compounding pharmacy in the US. Various testimonials can
be found on VIP activities in ME/CFS by searching online, although not a whole
lot is available. VIP is a vasodilator that seems to potentiate other drugs or
supplements. It is believed to help with sleep. As part of
the Cheney protocol it is described here. This is from several years ago. Testing VIP levels can be
done at ARUP labs. Other labs appear to be unreliable.

B12

In the last two or three years,
I have learned about transdermal or liposomal delivery of various items,
including B12. B12 can be very effective when injected, either methyl or hydroxyl
or both. However, for certain patients, injections present a real problem. One
very nice solution is the transdermal b12 oils, made in Australia. They can purchased through b12oils.com. This company makes an adenoysl
B12 spray as well as both methyl and hydroxyl and various other combinations,
including a transdermal b-complex. The oils are delivered by a predetermined
sized spray to be rubbed directly on the skin. There are several discussions of b12 oils on Phoenix Rising. This product increases B12 on an OAT test. B12 is closely linked to B2. One can also buy or make several different
liposomal b12s. Liposomal products generally are better absorbed. Taking methyl b12
can help with sleep.

Magnesium

A number of years ago I
began looking around for ways to get magnesium in the body other than through
pills or injections. I came upon a magnesium sulfate cream made by KirkmanLabs. This is effective for short durations, perhaps an hour or two. Ultimately,
I explored how to make transdermal magnesium myself. This
could be both cheaper and allow me to make larger amounts. Through the internet
I have learned to make a transdermal magnesium chloride cream that allows a
serious uptake of magnesium. It is especially helpful if applied prior to sleep. It is relatively inexpensive, and it works. Applied in enough volume to the skin, magnesium
is critical in putting a person on the road to sleep. Its duration of activity
seems to be two hours at the most. To further increase magnesium, I have learned to make emulsified or liposomal products. Specifically, I
have learned how to liposomalize magnesium threonate. This really helps taken prior to sleep or during the night, and it lasts considerably
longer than the lotion. In my view, magnesium is a key to solid sleep. Various liposomal magnesium products can be bought online or from compounding pharmacies. They tend to be expensive. 5-htp, SAM-e, Uridine

It is very difficult to determine what might help slow wave sleep. A few supplements have some anecdotal testimonies. Among
these are 5-htp and SAM-e and Uridine. All are mentioned as increasing deep or slow wave sleep. Both of these can be put in a
protocol and tested against a sleep sensor. One can quickly determine in a few
weeks whether a particular item might improve sleep.

Piracetam

Piracetam is a prescription
drug in Europe. In the USA, it is available as a supplement. It was the first
of what are known as nootropics. Piracetam is widely studied but not in ME/CFS. It is hard to believe that there is so little research on this substance in ME/CFS. However, there is some good information on Piracetam
on various sites. The first is cfsremission and can be read here. Scroll down on this page by Maija Haavisto and read what she says. The third is included in a book and website by Erica Verrillo here. In certain cases, Piracetam can have a
profound affect on sleep. As is usual, the opposite can happen also. Two more widely employed studies on Piracetam and oxidative stress can be found here and here. Piracetam can be liposomalized.

Other items

Other items that are worth
testing for sleep are GABA/theanine liposomal spray, glycine, l-ornithine, melatonin, valerian
root, bacopa, and others. All need to be tested as trial and error.

Drugs

Several drugs are suggested
for restoring deep sleep in ME/CFS. Among these are Trazadone and Xyrem. I
don’t not know much about Trazadone, but I myself would be worried about a
dependency on an anti-depressant. Many drugs are double-edged swords. Some believe that severe ME is the result of
negative drug reactions - and. from my own situation, I would tend to believe this. Xyrem is a
miracle drug for some patients, with ME/CFS and otherwise. It was studied a few years back by
Klimas, with favorable results. Xyrem is capable of putting some patients into
regular and sustained deep sleep. It can bring significant benefit to ME/CFS patients, provided they can tolerate the drug. As with many drugs, Xyrem appears to lose
efficacy over time - and it also seems to have various unpleasant side
effects for some, including heightened daytime anxiety and driving hunger. Xyrem is heavily regulated and controlled by Jazz Pharmaceuticals, which holds a monopoly. Back when it was held by Orphan drugs, Dr. Enlander was interested in doing trials for ME/CFS. In the 1990s, GBH could be procured in a health food store for $30. Xyrem now costs thousands of dollars. It is prescribed mostly for Narcolepsy and Cataplexy. By definition one cannot have narcolepsy without cataplexy. In my opinion, ME/CFS is a cataplexic illness. All patients should qualify for taking this drug. I have seen this work in certain patients and it is impressive. In 2009, Klimas was onto this treatment, but she seems to have been discouraged by the difficulties in procuring it.

Low dose oxygen

For years ME/CFS patients
have taken nasal oxygen. Generally it seems to relax patients and help
prepare them for sleep. Oxygen at higher levels is believed to be toxic to
ME/CFS. At lower levels it works in a paradoxical fashion, as recently described
by Dr. Paul Cheney. The closer one can take low-dose oxygen to sleep time, the more effective it can be. Certainly a trial of taking low-dose oxygen during the first part of the night is warranted. It seems to blunt awakenings caused by a stress response to low oxygen saturation. One can get a hint of this on a sleep sensor program. More particularly, oxygen
saturation can be measured by a simple device placed on the finger and wrist at night. This device measures oxygen saturation and heart rate, so that the problem can be identified. It appears that a good number of patients respond well to low-dose oxygen during sleep.

And then there is hemp and marijuana based CBDThese CBDs, along with CBN and THCa, and maybe CBG are incredibly promising as a sleep treatment in ME/CFS. I will write a bit about this in my next post.

Sunday, July 23, 2017

Most people would agree that good, solid sleep is
essential to recovery, or stability, in ME/CFS. Some doctors talk some about sleep, some not at all.. My idea has always been – Correct the sleep and set the
stage for recovery or betterment. This is easier said than done.

One basic question is how do you get objective
information on sleep quality? If the patient is able to move, one could have a sleep
study done. But this is only a short cross-section slice of a big picture and it is difficult to do
every night. Believe it or not, sleep studies are different on back to back
nights. To be really effective, you would have to do a string of
them and maybe every month.

So - what is the next best option, something that
is a little more practical? My son Peter bought his sister a Beurer SE80, a home use sleep sensor. This
sensor is one of a number that are on the market. All of these type of sensors
use movement, respiration and pulse in tracking a patient’s sleep. There are
more sophisticated items coming down the line. It is a rapidly moving field so
one needs to pay attention.

The Beurer SE80 is a six-inch flat disc, placed
under a mattress, near the heart of the patient. It is plugged into the wall.
It records its information on a device - an IPhone or IPad or other - via
Bluetooth. The recording device has to be within 25 feet of the sensor. Various
reviews of the Beurer SE80 complain about the program, that it doesn’t archive,
blah, blah, blah. In my opinion, it generally records and makes available the
necessary information. It is not perfect, but it is very useful.

The sensor is turned on when the patient is
about to go to sleep. The sensor detects when the patient falls to sleep. The
sensor tracks when the patient is asleep, when the patient is awake, or away from the sensor (out of range,
from movement or getting out of bed). Through movement, breathing and
heart rate, the sensor calculates (guesses at?) estimates of deep sleep or Slow Wave
Sleep, REM and what they call light sleep. It gives results both in a
percentage and time breakdowns. It tracks average overnight heart
rand respiratory rate

In the roughest sense, one can get an idea when
the patient goes to sleep, how long they sleep, when they awake, when they get
out of bed, when they go back to sleep and when the sensor shuts off. On a good
night, a patient might turn the sensor on at 11, go to sleep at midnight, move
immediately into slow-wave sleep, cycle through periods of REM, and wake up.
The time awake is noted and records when the patient goes back to sleep. My
particular patient sleeps in stages, first sleep, second sleep and often third
sleep (in the morning). Certainly, everyone is different in this regard.

The first question one might ask is how accurate
is this device? How accurate especially are the deep sleep and REM categories?
To this I can only answer, I do not know.

However, like with pedometers, I have learned to
pay more attention to consistency or predictability than accuracy. It you wear
a pedometer - like the Fitbit - every day, day after day, one gets the sense of
consistency and reliability. Anyone with this illness who is able to move
should be on a Fitbit pedometer. It is the only objective device available to
ME/CFS patients, a device that will track regression and improvement. I
remember standing in astonishment with the tall Rituxamab fellow, as he laughed
at my suggestion to use a pedometer on his Rituximab patients. His first argument
was that it was too expensive. Then he said that it wouldn’t work. I just
turned away, wondering where this guy left his brain?

We started using the Beurer sensor a year ago
now, using it every day. About 10% of the time it does not record all night,
for various reasons – thunderstorms, internet or Bluetooth failure, low
battery - and sometimes for no apparent reasons.

Over this time, a year, I have gotten a pretty
clear picture of my patient’s sleep, both in its ups and downs. 400 sensor
reports gives you a feeling of what is going on. With the information gathered
from this sensor, I seek means for achieving improved sleep.